Painful
Pion e
West Bloomfield woman to
undergo first stem-cell transplant
for rare autoimmune disease.
JOANNA BRODER
Special to the Jewish News
S
ix years ago, Kelli Raff-
August woke up one morning
to find her hands had swelled
overnight to three times their
usual size.
To that point, her life had been
normal. Raff-August, of West
Bloomfield, was a healthy 36-year-old
Jewish woman who taught tap danc-
ing.and took care of her 4-year-old
son. She'd had minor bouts of joint
pain (no doctor could ever diagnose
it), but otherwise was completely
healthy.
Four years and 18 physicians later,
Raff-August finally received the correct
diagnosis. She had an autoimmune
disease that is extremely rare in the
U.S. and Europe, but more common
in Turkey, the Middle East and Asia.
Next month, Raff-August will be the
first person in the world to receive a
stem cell transplant for her disease.
She has an inflammatory disorder of
unknown cause involving skin lesions
and small blood vessels, eye and joint
swelling. It is so rare in the U.S., it is
unknow exactly how many people
have it. A Sephardi Jew whose father is
a first-generation American from
Joanna Broder is a research associate
in bioethics 1,41-he University of--
Michigan Medkiiii School, Ann Arbor.
Spain, Raff-August
has other family
members with
Kelli Raff-August is co-chairing a golf tournament
autoimmune dis-
to raise money for pediatric cancer research at City
eases. Her doctors
of Hope. The Aug. 12 tournament at Bay Pointe
have told her that
Golf Club in West Bloomfield is co-sponsored by
the disorder is more
the City of Hope and Temple Beth El Brotherhood.
common in
For information, call Richard Gibbs, (248) 350-
Sephardi than
3400, or Bruce Jacob, (248) 421-0475.
Ashkenazi Jews and
there is a possible
hereditary link.
ence; my greatest joy was to be home
Researchers are also investigating
for my. young son," says Raff-August.
environmental factors that may trigger
the disease, such as the bacteria that
causes strep throat. Raff-August's dis-
Uplifting Film
ease tends to develop in people in .
Last January, her spirits lifted after
their 20s or 30s.
watching
a documentary on the City
Many with this disease can manage
of
Hope
(COH)
National Medical
their symptoms with drugs, but Raff-
Center
and
Beckman
Research
August's case was unusually severe. It
Institute
in
Duarte,
Calif.
COH treats
quickly became totally debilitating.
cancer
and
other
serious
diseases.
Today, she cannot walk, drive or even
Raff-August pleaded with doctors to
turn a magazine cover without severe
let
her into a clinical trial on Lupus,
pain. At times, her eyes have swollen
an
autoimmune
disease similar to
to the point of blindness, and she
hers.
The
team
accepted
her as an
takes morphine daily to control pain.
"out-of-protocol"
study
participant,
To make matters worse, Raff-
due in part to her extremely poor
August's body often rejects the many
quality of life. The stern-cell trans-
medications she takes (costing $2,500
plant, which will cost $200,000, will
a month). -
be covered by insurance.
Having to give up work, Raff-
Raff-August will spend eight weeks
August became,a stay-at-home morn -.A
at
COH, preparing for and reth‘
to her now-10-year-oldison, ,
from
the procedure. It has been as.:(
AlexanTwo years-ago, she met her
that
trikname
of Raff-August's disease
' husband, Jeffrgh area chef.
secorid.
not
be
released
because her treatment
"The-greatest loss was my independ-
Tee Off For Kids
is experimental.
Being a pioneer comes with risks.
Raff-August's experimental procedure
has a 10-15 percent mortality risk.
She's decided to pursue the transplant
against the judgment of her
Huntington Woods rheumatologist,
Dr. Berj Nercessian, who admits,
"She was almost at the end of her
options [and] everything else had
failed."
While impressed by her bravery, Dr.
Nercessian is concerned by the risks
and poor outcome measures. "I'm
very skeptical because it is very new
and there aren't any good parameters
(for success measurement) after the
treatment," the doctor says.
According to Raff-August, doctors
predict the transplant will not cure
the disease, but may put it into
remission.
Stem-cell transplants are a last
resort for autoimmune diseases, and
are usually reserved for those with the
poorest quality of life, according to
Dawn Hafeli, vice president for pro-
grams at the Arthritis Foundation
Michigan Chapter. Rheumatoid
arthritis is an autoimmune disease
affecting 5 percent of women older
than 55. 'Are we putting a patient at
risk when there is no risk that they're
dying from their disease necessarily?"
Stem-cell transplants have tradi-
tionally been used in cancer treat-
ment to allow patients to tolerate
heavy chemotherapy or radiation.
Recently, clinical trials have arisen to
test stem cells in autoimmune disease.
President George W. Bush made
headlines last year with his decision
to allow continued use of federal
funds for research on existing embry-
onic stem cell lines (embryos are
destroyed in this process). The stem
cells used in Raff-August's procedure
are taken from her own body and so
do not spark the same ethical debate.
At COH, doctors will remove stem
cells from Raff-August's blood, purify
them and infuse them back after
Raff-August has undergone
chemotherapy and radiation to
destroy her immune system. Some
stem cells will re-form into immune
cells, hopefully lacking a diseased fac-
tor.
Raff-August hopes she can go back
to work, this time as a patient advo-
cate educating physicians on disease.
When... she first had symptoms, she
was forced to learn as much as she
since most of her doctors had
not heard of her disease.
"You have to become completely
knowledgeable," she says. 111
7/26
2002
97